Woohoo!!!

Sophie slept in her own bed last night ALL NIGHT LONG!!! I cannot remember the last time she did that. Usually (or should I say always), she ends up in our bed around 3am if not earlier. Today, she slept in until 8:30am. Luckily, she did not have therapy until 9:30am so I did not have to wake her up. It was a very busy day today. Sophie had speech therapy at 9:30am, developmental therapy at 11:30am, and occupational therapy at 12:30pm. By 1:45pm, she was in her crib sleeping. Unfortunately, that nap did not last too long. She woke up crying twice and by 2:45pm she refused to go back to sleep. Surprisingly, she was not crabby at all. She had her afternoon snack, went to the grocery store with me and then we all went over to a friend's house for dinner. I guess that good night sleep was enough for her. If this is her new schedule, I have a lot of adjustments to make to mine. One hour is not enough time for me to eat lunch, shower, clean the kitchen and just have a bit of down time. But I will take her sleeping through the night anyday. That means no waking up in the middle of the night having seizures. Those are the worst. Oh by the way, we had to go back up to 5mg of Clobazam (2.5mg in AM and 2.5mg in PM). Her seizures would not stabilize on the 2.5mg of Clobazam a day. So next week we will most likely start Keppra.

Sophie is a big sister...

Yes, I am pregnant. We found out today that it is a girl!!! So far, the pregnancy is going well and all the test have come back normal. We are working hard to get Sophie to walk more. Brandon was actually just outside with Sophie and she was walking by herself. Usually, the second she walks outside, she wants to be held. I guess she is becoming more confident with her walking. When we are inside the house, she will walk towards me if I am doing something in another room. But if we are in the same room together and I start walking towards another room, she gets very upset and wants to be picked up. Well, I figured out yesterday that if you hold her hand she will walk with you. I guess she just thought she was going to get left behind. So that is her new thing - handheld walking. Anything beats carrying her. She is getting so big. Not to mention, I am starting to get big. So now it's time to think about names for our new baby girl...any suggestions???

Way to go, Sophie...

Sophie's development is at an all time high. Most likely due to only being on 2.5mg of Clobazam. This is the least amount of antiepileptic drugs she has been on since this all started. Everyday she seems to amaze me. She does things that may seems so minor to most 22 month olds but for Sophie they are huge progress. We are all so proud of her.

When she sees something that she wants, she will walk across the room, stare at it, then scream. Not a bad scream, more like "ahhh" really loud.

She will also point at things that she wants. Occasionally, when I line up her food for a meal, she will point at what she wants to eat first. For lunch, she will always point to her chicken salad first.

She uses her pointer finger to manipulate toys...like push buttons, flip switches, etc. She knows what buttons to push on her toys to turn them on.

She is starting to gently put her sippy cup down instead of throwing it down like it's on fire. Hopefully, this is the start to the end of her compulsive throwing.

She is getting much stronger at walking. Also, she is getting much stronger on the ability to stand up without assistance. We all know that she is able to stand up on her own but she refuses to do it. She will use something as low to the ground as her boppy pillow to stand up.

She says no and knows what no means. It is not like I tell her no very often but she learned that word quick. She cries when I tell her no. And if I try to make her do something that she doesn't want to do, then she will say "na na na na na". And if she is really mad, then she will say "NO".

She is a climber. She tries to climb on anything. She tries to stand on my legs when I am sitting down. She tries to stand on any toy on the ground. She climbs up on the chair and then to the couch. She climbs up on the ottoman. She can almost climb up on the couch. Anything that she can get a step up on, she wants to step on it.

She is more vocal. She is making more sounds. Sometimes I think she knows what mama, dada and sissy means. Though she will not use mama and dada consistently.

She uses both hands to pull things apart. She loves to pull tissues out of the box and rip them up into little itty bitty pieces.

All in all, she is more explorative, more aware, and more demanding. Sometimes it is exhausting but I love it. It is so hard not to spoil her. She is just too darn cute. I know, I know, she is my daughter. But really, she is just too darn cute. The way she will walk up to a complete stranger and smile at them. That precious, heart warming, smile. How can that not brighten up anybody's day. How can I not spoil her with that smile. It makes me smile just thinking about it.

Another med decrease...

We have been slowly decreasing Clobazam since we returned from Johns Hopkins. It wasn't the neuro's initial suggestion but he agreed to let us try and see what happens. Since Sophie is not seizure free then "playing around" with medication levels is not as crucial as if she was seizure free. Initially, she was on 10mg per day (5mg in AM and 5mg in PM). We started the wean by taking away 2.5mg in the AM. At first she did not handle it too well but then she stabilized. Then we weaned 2.5mg in the PM which she handled very well. Last night, we weaned the other 2.5mg in the PM. So now she is only on 2.5mg in the AM. This also means that she is not on any antiepileptic drug in the evening. Wow- that is so nice. Hopefully, the rest of the wean will go well and we can keep her off any antiepileptic drugs for a couple of weeks. I would just love to see what this will do to her development. Eventually, we will give Keppra a try.

Florida Vacation

We had a wonderful vacation in Destin, Florida. It was relaxing. The weather was nice. The ocean and white sand beach were beautiful. Brandon got to play golf twice, tennis once and watch some Cardinal baseball games. Haley and Sophie got to go swimming everyday (even as late as 9pm and as early at 8:30am). Brandon and I drove by the spot where we got married at exactly 5 years ago on July 28th. What great memories!!!

Here is a video of our vacation. As you can see, Sophie had a wonderful time swimming in the pool. She has learned so much since that vacation that I will have to post about later. Thank you Grandma Debbie for a wonderful vacation and a much needed break from our daily routines.

IFSP...

IFSP stands for Individualized Family Service Plan. It is part of the Missouri First Steps program (Early Intervention) in which Sophie receives her therapy. The IFSP is held every 6 months in which Sophie's service coordinator, therapists and I all meet to come up with goals for the next 6 months and also to discuss how much therapy Sophie will need.

The previous IFSP was held on January 22, 2007. One of our concerns at that meeting is as follows:

"Family is concerned about Sophie's motivation to crawl across a room. For example, she is crawling about 10 feet, but does not want to crawl from one room to another to get mom or dad or to something she wants..."

Can you believe that?!?! That was just 6 months ago!!! Now Sophie is walking all over the place. We are continually amazed at how fast she can walk from one room to the other. She is so quick. She will even leave the room we are in to go explore another room. She is becoming less dependent on us. I am so proud of my baby girl. Sometimes I forget how far Sophie has come.

Sophie was also approved for weekly physical, developmental, occupational and speech therapy. We should receive the new IFSP sometime next week. Sophie will also start preschool in September and will start receiving some of her therapy at preschool. She will be going 2 mornings a week from 9am to noon. I am anxious to see how she handles that transition.

Update...

The last 3 weeks have been absolutely crazy. It all started on a Monday morning with Brandon, Sophie and I coming down with a stomach virus at 6am in the morning. Luckily, Grandma Debbie did not catch the virus and was able to come over and help with Sophie. The virus put us out of commission for a good week. Then the following Monday, Grandma Debbie, Sophie and I left for Baltimore for Sophie's 3 month follow up visit at Johns Hopkins. Then on Friday we left for Florida and just got back this past Saturday. On Monday, Sophie had physical therapy and her 6 month IFSP meeting. On Tuesday, Sophie had gym class and a dermatology appointment. Wednesday was a fun day and we went and saw Charlotte's Web at the movie theatre with Haley, Aunt Erin, Colin and Nicholas. This brings us to today where I am finally sitting down to update the blog.

Back to Johns Hopkins... The trip went well. Sophie was great, as always. The appointment was somewhat depressing, as always. I hate taking Sophie to her neurology appointments. I always end up asking the questions that never have positive answers. The doctor convinced us to continue with the diet for another 3 months. Why not? What other options do we have at this point? Sophie has already tried and failed 7 different seizure medications. It is all a waiting game now. All I can do is hope and pray that Sophie's seizures will miraculously stop. I say miraculously because none of her neurologist seem to think they will completely go away. They all think that this is something she will have to deal with for the rest of her life. Very depressing!!! I can deal with her developmental delays. I cannot deal with her seizures. It is a daily battle for Sophie and it is heartbreaking to watch. We are trying to wean Clobazam. She was on 10mg a day and we are trying to wean 2.5mg every two weeks. Once we wean the Clobazam, then we are going to add Keppra.

I will post all about Florida in another post. I have a lot of pictures and video to download. Though to sum it up...it was a much needed break from our daily routine and we had an absolute blast.

I will also post later about the IFSP as I have some good news to share.

Long time, no post (what's new???)...

We increased the ratio to 4:1 to only see an increase in seizures so we are back to 3:1. We are going to Johns Hopkins next Tuesday for a follow up visit to discuss our next option...stop diet? new medication? wean clobazam? I so want her off clobazam but I highly doubt the doctor will think this is the right time.

Sophie's walking is getting better everyday. She is walking everywhere. She just is not consistently steady. We are working on transitioning from a sit to a stand without any assistance. She will be much happier once she can stand up all by herself. Right now she needs something to pull up on. I believe she could stand up by herself if she would only try but she is really dependent on looking for something to grab onto.

We met with her local neuro last week. Sophie had a 1 hour EEG. The EEG showed some improvement over the last one (back in March). Her background rhythm looks a bit better. She is still having bilateral spike waves mostly in the frontal lobe. We also spoke with her neuro in Detroit and he would like to do a repeat PETscan once she is off the diet (you cannot do the PETscan while on the diet because of the change from glucose to ketones). So for now we are waiting to find out what will happen in our appointment at Johns Hopkins.

Quick update...

Sorry I have not posted in so long. Sometimes I just do not know what to say. Sometimes I just feel like I type the same things over and over again.

Sophie's walking is getting better every day. She went swimming the other day and absolutely loved it. It took her awhile to get use to the water but once she did she had a blast.

We went up to 4:1 ratio. No improvement in seizures. She has been having more frequent seizures throughout the day. We will give the 4:1 ratio a few more days and then talk to the doctor about going back down on the ratio.

Climbing steps...

Sophie absolutely loves climbing steps. Last week she learned how to get back down. Out of nowhere, she scooted her butt down and dropped to the next step. I guess I shouldn't say out of nowhere. We had been working on this. It is just that it is always on her terms. When she decides to do things for the first time, she does it when you least expect it. She does it when you are not trying to get her to do it.

More stable???

Like everything else in life, Sophie's walking is all over the place. Some days she will walk from one room to the other. Other days she can't take more than 3 steps without falling over. But she is getting more stable. She is now able to change directions. Last week, she was standing next to Haley and then walked towards the back door. Once she got to the back door, she turned around and walked straight back to Haley. She did this without even stopping or touching anything to gain balance. She did a complete 180. That has to take a lot of balance. She did it so quickly that I looked at Haley and asked if she really just did that. Since then, she has done it several more times.

Video of Sophie walking...

More walking...

Sophie's walking is getting better everyday. She can now take up to 20 steps without falling. She is becoming more and more stable. We have seen some improvements in her seizures. They are not as intense and her clusters are smaller. Hopefully, she will continue to progress in the right direction. We are going to increase her ratio for the diet tomorrow.

Higher ratio...

Sophie's seizures are still the same. We have been corresponding with the neuro at Johns Hopkins and he has decided to increase the ratio to 4:1. She is currently at 3:1 ratio. As soon as we get the new recipes from the dietician, we start the new ratio.

Walking...

Sophie's walking is getting so much better. She is getting steadier and walking further. Last week, Sophie's physical therapist said that Sophie is taking toddler steps. She is also great at climbing steps. Sophie also was casted for new foot orthotics last week. She currently has UCB which fit right into the shoe and are below the ankles. She was casted for SMO which also fit right into the shoe but will come above the ankles. This will give her more support and hopefully she will start walking even better.

Better night...

Sophie had a better night last night. What a relief!!! She did not wake up until 5:30am. She had about 50 seizures. They were not mild but they were not as intense as they have been. No screaming and just a little crying. She is still sleeping. Hopefully, she will have a good day day. I am in such a positive mood right now. I was starting to lose hope or maybe it was just pure exhaustion. Either way, I am very hopeful right now.

No more Zonegran...

We weaned Sophie off of Zonegran. It feels so good to have one less medication to give her. We have also seen a spike in her alertness and moodiness. She has become quite the demanding one. I absolutely love it. I will take whatever personality she brings. Though it was quite the trip to Chicago last Wednesday. Luckily, Grandma Debbie was there to help. Sophie was all over the place on the plane. On the way home, we were able to settle her down by letting her drink out of a real cup. That is one of her most favorite things to do. She will drink and drink and drink out of a real cup. If she has some cytra-K left to drink (it's a powder mixed with water that is suppose to help prevent kidney stones), put it in a real cup and she will drink it. Oh, by the way, her head is looking great. I think only 2 more trips to Chicago and 6 more weeks in the helmet and we are done!!!

Another long night...

Sophie woke up several times last night. She went to bed at 8:15pm. At 9:20pm, she woke up and had 4 mild seizures. Then around 12:30am, she woke up and had around 20 mild seizures. I brought her into bed with us and she had a hard time falling back asleep. I was too tired to bring her back upstairs. I think she was in and out of sleep for about 2 hours. She would lay next to me and then sit straight up and say "dadada". Then I would get her to lay down next to me again and about 15 minutes later she would sit up again. At least, she did not appear to be having any seizures. Then at 4:30am, she woke up and had around 50 bad seizures. Her whole body would tense up and she would scream and cry. These seizures just break my heart. It is so hard holding her while she is having these seizures. I just hold her and pray that they stop. I hate counting her seizures. I hate it. I hate it. I HATE IT!!! It feels like the seizures are just not going to stop and the number just keeps getting higher. It is the worst feeling in the world. My poor baby girl...I cannot imagine what that must feel like.

Up to 10 steps...

Sophie's walking is getting so much better. She can take about 10 steps at a time before falling over. Usually, her right foot gets caught up and she falls. She walks like a drunk...never in a straight line. Tomorrow we have an appointment to get casted for new foot orthotics. She has UCBs and now she is getting SMOs. The SMOs (supramalleolar orthotic) will give her a little more support than her UCBs.

Guilt...

Sophie is still having nightly seizures. She has been waking up around 2:15am and having a cluster of seizures. When I hear her make the slightest noise at this hour, I know to jump out of bed and get her quickly. Well, the other night, I was just too exhausted to jump out quickly. So by the time I got to her, she had already had a seizure and hit her face on the side of her crib. It was dark but she looked to be okay. So I picked her up and put her in bed with us. She had about 75 seizures. They were the bad ones. Where she shakes and screams and cries. Eventually, we all fell back asleep. The next morning when I got out of bed, I saw a large brown spot on the sleeve of my shirt. Well, it turns out that she busted the inside of her lip open and bled everywhere...through the pillowcase onto the pillow, through the sheets onto the mattress pad, and on her bunny. Poor girl. I feel so guilty. If only I had gotten to her quicker... But my guilt is nothing compared to what she must feel. I would do anything to take away her pain yet I can't even imagine what it must feel like to go through what she goes through.